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FILE - In this May 30, 2013 file photo provided by the Murnaghan family, Sarah Murnaghan, center, celebrates the 100th day of her stay in Children's Hospital of Philadelphia with her father, Fran, left, and mother, Janet. The national organization that manages organ transplants on Monday June 10, 2013 resisted making emergency rule changes for children under 12 who are waiting on lungs but created a special appeal and review system to hear such cases. (AP Photo/Murnaghan Family, File)

Girl who got new lungs in Pennsylvania has pneumonia

PHILADELPHIA — A 10-year-old Pennsylvania girl who had a pair of adult-lung transplants after her parents sued to change national rules regarding organ donations has developed pneumonia in her right lung, which her mother described on Monday as "a large setback."

Sarah Murnaghan's mother wrote on her Facebook page that after a "tough" day on Sunday, Sarah's condition had become more stable on Monday.

"We have an amazing team of doctors who go above and beyond but also walk this road with us in such a kind and compassionate way," Murnaghan wrote.

Officials at Children's Hospital of Philadelphia, where Sarah is being treated, have declined to comment on her case.

Sarah has been hospitalized for months with end-stage cystic fibrosis, a chronic genetic disorder that causes sticky mucus to build up in the lungs, pancreas and other organs. The girl from Newtown Square, Pa., a Philadelphia suburb, was a top candidate for organs from a child donor but none were available. Her parents sued to change a national transplant policy that put her at the bottom of the adult list for patients 12 and older.

A federal judge intervened and the Organ Procurement and Transplantation Network — the private nonprofit group that manages U.S. organ allocation — added Sarah to the adult list.

Sarah's situation has sparked a national debate and raised questions among some health experts and medical ethicists about how organ donation rules are developed and under what circumstances they might be disregarded.

Sarah received an adult set of lungs on June 12 but they failed within hours. She stayed on a ventilator until a new set became available for a second surgery, which occurred June 15.

Her mother said after Sarah's second lung transplant that those lungs were infected with pneumonia but doctors had removed the infected portion before the transplant and the girl's condition was too dire to wait for another set of lungs to become available. That transplant did prove more successful, and Sarah was able to take a few breaths on her own after doctors removed her breathing tube.

She had to be put back on the ventilator because of diaphragm paralysis, which her mother described as a common complication that prevents the lungs from fully expanding. Sarah underwent surgery to repair her diaphragm July 2.

The typical life expectancy for cystic fibrosis patients is 37 years and continues to rise as new medical advances are developed. Lung transplants do not cure the condition but can extend the patient's life.

The Organ Procurement and Transplantation Network assigns transplant candidates a score based on a variety of factors in order to determine which gets paired with a set of donor lungs first.